Sunday, September 16, 2012

LIFE & TIMES OF THE "SPECIAL STUDY"

So during my visit to San Francisco I wasn't with Dr. Wolf 30 seconds before he said, without any prompting from me, "September 13 is the 3 year anniversary of your 1st visit to us.  Nobody thought you'd ever make it, but here you are."  In conversation the whole 'Miracle Patient" and 'Special Study" was discussed.  We both were shaking our heads and laughing.

I brought up 2 cakes and some cookies with me to celebrate the anniversary.  1 was for Dr. Wolf and all of his staff.  1 was for the nurses at the 11th and 14th floors of the hospital who helped keep me alive through everything including the bone marrow/stem cell transplant.  On both cakes I ripped off a couple of lines from movies and had them inscribed (or is it inicinged?).  You'll have to guess which movies.  They said; "I'm not dead yet!" and "I'm only MOSTLY dead."  They all loved it and wouldn't even cut into it until everyone had a chance to see it.   The cookies were for Dr. Burch my orthopedic spine surgeon and his staff, who have allowed me to stop knuckle dragging and be more less active. Thanks to Rod Blackner and his staff at the Culinary Academy for the goodies. 

So here's the deal... My numbers on my internal organs are not going up as quickly as they would have liked or anticipated.  But, as Dr. Wolf reminded me, I'm not only a special study, but apparently a slow learner as well.  Some of my numbers had gone down, but not to a degree that would require any immediate medical attention.  Liver function up very slightly, but UP!  Kidney function up from about 20% to about 24%, but UP!  Red and white blood cells down a little, but that's never too unusual.  Platelets were down significantly, and that's not good, but not to the point where I'd need an infusion again.  The cancer numbers are up, but not to the point of requiring getting back on the daily chemo just yet.  I'll be doing labs with Dr. Malone in SLO in a week, so they're keeping close tabs on it. So the  I still have many medications but way less than even a year ago, and less frequently.

Another interesting thing that Dr. Wolf and i talked about was the frequent and sometimes significant pain in my right hip.  He wondered if it was because of the cancer that literally ate through the bone and socket and which had the equivalent of 5 weeks of radiation done to it in 5 days to try and knock it down before it ate up the whole thing, or if it was simply arthritis.  I told him that personally I didn't care which and would like the pain to go away if it can.  We'll do an MRI and see what's up.  Another chapter in the saga.  Don't hold your respective breaths, however.  It's not an emergency so who knows how long it will take to get approved.

I again stayed with Dan and Joan Murphy.  Joan is the sister to my friend Dennis' wife, Marie.  They are such a delight.  I was beat from my long day, and must have said, "Well, I should be going to bed soon" at least 5 times before I finally did.  It was after midnight!  THAT's how fun they are.  We also had dinner at a great restaurant called Boulevard Cafe in Daly City.  It's on John Daly Boulevard just off of the 280.  It was great!  If you're ever up in the area, you should really try it.  Dennis is doing OK, but is in another study.  The Drs. can't figure out how he can be doing so well when his numbers are so bad.  We know.  Wink, wink.

Because Dr. Wolf couldn't get me an MRI on Fri, my kidney functions didn't require a visit to the nephrologist (kidney doc) and I had seen everyone I needed to see, I was free to go on Fri.  The weather was wonderful.  Dan and Joan knew it was because of me and begged me to stay the weekend as they had some birding and other activities to do and needed my good weather, but alas, I could not stay.  So I headed down Hwy 1 and the coast route instead of the 101 or 280.  Stopped in Pacifica and dropped in on a high school friend, Sheryl Lex-Smith, which is always nice. She's such a nice person.  Someday when I grow up I want to be nice like her too.  I walked the pier.  Took some pictures.  Drove down to Half Moon Bay and had lunch at a great little sandwich shop.  I parked downtown and looked around for someone to ask where i should eat.  Ah ha!  The UPS guy.  He was right.  Bread baked every day.  Great.  Don't remember the name, but I could describe how to get there if you asked me.  It's next to the old hotel downtown, and has a great patio area.

So there you go.  That's the latest for now.  Thank you all for your continued love and support.  I'll have another report when I get all my labs back from Dr. Malone around the 4th of October.  So I'll update you then unless something really, really good happens, or really, really bad happens.  Forget the bad.  Just good.

2 comments:

  1. It doesn't have to be really, really good or really, really bad to be note worthy. We love to hear from you no matter what. :) Please give Aunt Dale our love too!

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  2. Kevin...it is always good to read your updates. Thanks for taking time out to catch us up :) We love you and your wonderful family. You are in our prayers. The Sniderbunch

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